Month: December 2018

The holiday season is manic. I’ll just start there. It starts around Halloween and sails right through Thanksgiving into Hanukkah and Christmas and then New Year’s. Since Halloween starts in early October now, with ghosting and decorating and thinking about costumes all part of the lead up to the big night, basically the whole fall, from back-to-school right through New Year’s is rich with the bustle of life and activity and, frankly, the pace is completely unhinged and frenetic and exhausting. Part of me loves it, and a big part of me wants to make it stop!

So, here’s the thing I’ve started to notice as life goes on and I get older, for certain, and hopefully wiser. You have to celebrate the little things in life every day. You have to take a step back and take that deep breath and find joy even when the rest of the day is utterly forgettable. Even when the day includes yet another trip to Party City and all you can think is “I just can’t.” Even when the day is spent stacked with activities and chauffeuring your offspring hither and yon. There is so much to be worn down by, so much negativity, so much TO DO, that you run the risk of missing it all, the proverbial not seeing the forest for the trees.

The stuff that we remember in life, the stuff that matters and that you’ll be thinking about when your time on this Earth is winding down, isn’t the holiday shopping (unless there’s some epic mishap that results in a good story to tell) or what you got or how much you got done, like there’s some holy checklist and the more you check off the better you are or your afterlife will be. No. The manic pursuit of a bucket list, or any list, how many places you’ve been, how much money you’ve made…these are empty and fruitless quests if the goal is happiness or contentment.

The stuff that really fills and sustains the soul, is found in the gathering of friends and family, of multiple generations, to enjoy a cup of coffee and some holiday treats on Christmas morning. The sustenance comes from the sharing of stories and experiences, from toasting our brimming coffee cups that will help us survive the day after a reveille that was a little on the early side. It’s in the sheer delight and simplicity of seeing my mom, who truly is only capable of living in the present anymore, marvel at the Christmas trees and lights and enthusiastically sing out Christmas songs. It’s a warm and gentle sea breeze; it’s the magic of dolphins playfully diving in and out of the waves; it’s a full moon hanging heavily in the evening sky – and still there in the blue of the next morning (a moonset sunrise); it’s a snow day when you just drop everything and play that board game with your kids and bake comfort foods and ignore the “to do” list; it’s a friend who leaves you tea and biscuits at your door when you are down and feeling broken.

There is magic and inspiration in the big things – a marathon or a trip abroad or a new experience. But it’s how you weave the experiences together, it’s what you live with every day, what sustains you when life isn’t particularly glamorous or grand, that matters most. It’s the daily appreciation of the little things: like an umbrella when it’s raining; a baby’s laugh that rings out like a balm for the soul; a solitary chocolate chip; a warm beverage; a hug from a friend.

Remember to be grateful and to cherish all of life’s little moments, even the messy ones. Because life is really the sum of its parts, and the little moments are what matter most.

As I sit here trying desperately to write for five minutes without being interrupted by one of my children, surrounded by the detritus of Christmas, I guess I should try to take this to heart. This is it. This is the good stuff.

So I’ll close with a memory and a song from several years ago. The setting is the East Sangerville Grange in Sangerville, Maine. It was February, it was freezing, the snow was piled high, and a blizzard was on the way. In this simple, modest, one-room grange hall in the central Maine highlands on this cold and snowy night many from the community gathered to listen to Bill Staines sing and play acoustic guitar. And I was introduced to one of the most beautiful and moving songs I have ever heard. It’s called Child of Mine. Click here to hear it live.

The full lyrics are displayed below. And they apply to everyone – adult, child, have children, or don’t – everywhere.

Face, don’t fear, the unknown.

Find joy in each day.

Love sees us through.

Connect with people and our common humanity.

And you will be buoyed by hope. And maybe survive the holiday season just a little more happily.

Child of Mine

Child of mine, you are the wildest wind
And the dearest dream I will ever know
Love’s lasting light shines out from deep within
This father’s heart as I watch you grow

Child of mine, you are the break of dawn
And the brightest star I will ever know
Love’s lasting light comes shining on and on
From this mother’s heart as I watch you grow

There is a road and that road is all your own
But we are here, you need not walk alone
To face, not fear each coming new unknown
Is the way to lift your wings
Child of mine, you are the sweetest song
And the greatest gift I will ever know

Child of mine, where spirits fly above
There is but one that belongs to you
So let it grow and it will thrive on love
For it is love that sees us through

You have the hands that will open up the doors
You have the hopes this world is waiting for
You are my own but you are so much more
You are tomorrow on the wing, child of mine

Like this:

Any woman who has had a baby knows about breathing through pain. And I am here to say that I am absolutely as imperfect as they come when it comes to breathing through anything. I get so angry and frustrated and want to just wallow in my misery sometimes. Very graceful. Very zen. I am more of a just-give-me-a-to-do-list-and-I’ll-do-it kind of person.

As with most new parents, we didn’t sleep much those first few months. Our baby was fussy and needed to be held all the time and, being the worried new mom that I was, I spent what little “free time” I had researching what I was doing wrong and the many ways I may never sleep again.

I am from a family that says things like, “I am not sick, I just don’t feel well”. We push through and don’t complain. So when my hands started to hurt about six weeks postpartum I chalked it up to constantly holding a heavy baby and exhaustion. The pain would come and go, and time was a very slippery and elusive concept in those days, so carpal tunnel syndrome seemed like a legitimate possibility. Sure some days my legs kind of ached, too, but that’s what atrophy feels like, isn’t it? I distinctly remember hobbling down the stairs to the backyard saying to my mom, “I feel like I am getting worse and not better. Is this normal?”. Then one day my knee visibly swelled up. Having barely left the house in months, let alone done anything active enough to cause an injury, I finally couldn’t find an answer for that one.

I was diagnosed with Rheumatoid Arthritis (RA) two weeks later. Cue record scratch. Arthritis is for old people, isn’t it?

I’d love to say that I went home from the doctor with my chin held high and soldiered on with zero self-pity. Ha! No, no, no. There were some serious bellyaching moments and I definitely asked “why me” more than once. I was shocked, almost offended, that this could happen to me. What the heck did I do to deserve this? Very zen, like I said. For me, RA meant one big old Rude Awakening.

Pro tip – don’t google your newly diagnosed disease when you get home from the doctor. It doesn’t end well. Ignorance truly is bliss.

With the words “severe prognosis” ringing in my ears, I was sent home to begin to ween my baby off breastmilk so I could start on some pretty powerful medications to try to change the course of the disease. I remember calling my OB and asking for advice on how to ween a baby, explaining what had happened and why in this age of “breastmilk is best” pressure I was stopping. The nurse I spoke with, thank goodness, was so compassionate. I will never forget her kindness and her words, “You did such a good job”. I needed to hear that. It’s very lonely to be sick, have a brand new baby with all the societal judgment that comes with parenting, and your choices aren’t yours anymore.

That was part of the emotional pain of RA for me. The diagnosis, whether you have a little baby or not, brings a flood of fears and unknowns. Google told me that 1/3 of people with RA are so disabled after five years that they can no longer work; I was denied short-term disability; the medication side effects and disclaimers were terrifying to read. The disease itself is an unpredictable roller coaster ride. Some days are better than others, some medications work well, others make you nauseous. It’s all trial and error. No lists.

And the physical pain? Well, it’s like nothing else, quite. A broken arm? Maybe. Childbirth? I guess so. It’s intense and deep and unrelenting. 40mg of prednisone and 800mg of ibuprofen wouldn’t even touch it some days. I couldn’t lift my baby out of the crib because I was cradling my arm so gingerly. Some days I couldn’t walk. I never knew where the pain would go next, which joint would be affected. Hips, shoulders, jaw – those are the worst. You can work around a hand or a finger, but it’s impossible to eat or even smile when your jaw joint is inflamed. I begged my dentist to tell me it wasn’t RA and I just needed a root canal. Anything, like I said, for someone to just fix it.

I have tried to figure out what triggers my flare ups. I cut out sugar and caffeine and alcohol and gluten – pretty much all joy – and it made no discernable difference except that I was more miserable and now high maintenance as well. I have submitted myself to science and participated in pain studies. Mostly I learned that I have a high tolerance for pain and that ice is my friend. I have no idea why some days are better than others. Remember how I said that I like order and a nice to do list? Yeah, RA doesn’t work like that.

It turns out that that kind of checklist mentality, where if you just check the right boxes you are in control, is a false premise. That remains a disappointing life lesson for me. But I am working on it.

Long, long story short, eventually the meds did their thing and my RA went into remission. For the time being, I don’t have any pain and haven’t had any permanent damage to my bones or joints. That in and of itself is a miracle. Truly. I’ll write a whole post on how different the outlook is for RA patients who were diagnosed after methotrexate started to be used to treat RA as compared to previously when all that could be done was attempt to manage the pain.

It took a lot of time, a lot of deep breathing, thousands of laps in the pool, sometimes screaming underwater, sometimes also crying into my goggles, for all the emotional toxicity to work its way through my system. But eventually, that piece settled, too.

Now I swim in a masters swim program. I participated in a triathlon a year ago, something that was absolutely unimaginable only a year prior. I go to crossfit. I traveled to Guatemala! Hope abounds.

I am tempted to say that I conquered RA, that I win. But that would mean that I haven’t learned anything from all of this. I have been around the block enough times now to know that my RA and I are just in a temporary place of peace, and that it will inevitably come back. And when it does, honestly, it will be really hard for me. I don’t expect that my despair will be as deep, but I’ll surely still long for that elusive checklist and the return to normalcy. Now I know, though, that I CAN come back, that RA is just one part of my story, and that I am not less than because of this. As Dory says in Finding Nemo, “Just keep swimming, just keep swimming”. Seems like some pretty darn good life advice. One day at a time. One breath at a time. One lap at a time. One foot in front of the other.

Like this:

If you said, “That’s a bathroom stall”, you’d be correct. But you’d be more correct and I’d be more impressed if you said, “That’s a wheelchair accessible bathroom stall! With a ramp to the door! In Guatemala!”

My cousin Chris has been in a wheelchair since a skiing accident in college. He is an accomplished athlete and motivational speaker. In his memoirs, he shares what it was like for him after his accident, learning how to adapt physically and mentally to his new and challenging reality.

Because of Chris’ experiences, specifically his time in Tanzania preparing to climb Mount Kilimanjaro, I may be more attuned to the challenges people with disabilities face, especially in the developing world. Have you ever noticed how rare a curb cut or an accessible bathroom is outside of the United States? Have you ever considered how difficult it might be to get around in a wheelchair period, let alone on a dirt path? In the snow? Without ramps? Without an elevator? With no wheelchair at all?

Needless to say, when I saw this bathroom in the small community of San Juan La Laguna in Guatemala I about fell over with surprise and joy. So today I wanted to share the important and meaningful work that Alma de Colores, a “labor and social inclusion program for people with disabilities” is doing in Lake Atitlan, Guatemala. And to encourage everyone to think for a minute about how hard it is to live in the developing world as an able-bodied individual. Or how difficult it can be to live in the U.S. as a disabled individual, even with the accessibility standards we have. And to simply be aware of that as you go about your day today.

My cousin spends a lot of his time speaking at schools with his Nametags educational program, shining a light on the disabled community so that they are seen, so we all start to see their potential and our own potential, instead of focusing on the limitations. The Nametags program teaches about resiliency, and also about the labels we put on ourselves and others.

Chris and Tajiri on top of Kili

Chris Skiing

Waypoint Adventure puts much of what Chris’ Nametags program talks about into action. Their mission is to “challenge youth and adults with disabilities to discover their purpose, talents and strengths through the transforming power of adventure”. And their work is incredibly powerful! The liberation and delight that comes from triumphing over an “I could never do that” mindset is truly thrilling.

Shel Shilverstein wrote the following poem in Where the Sidewalk Ends:

Listen to the MUSTN’TS, child,Listen to the DON’TSListen to the SHOULDN’TSThe IMPOSSIBLE, the WON’TS,Listen to the NEVER HAVESThen listen close to me –Anything can happen, child,ANYTHING can be.

Alma de Colores, Nametags and Waypoint Adventure provide the support and structure to make the impossible possible. They teach about the power of community and inclusion, that no one climbs a mountain alone, that together we can transform people’s view of their abilities. Those are phenomenal messages that transcend international boundaries. Those are the universal messages of our common humanity.

Main street in San Juan La Laguna

Entry port to San Juan

Amazing Artwork in San Juan – and dogs

Village and Mountains View

Please go ahead and share the good word!

Like this:

To anyone who has been touched by Alzheimer’s, I stand with you. I know there are millions of us, but I have never felt so lonely as I did in those first few months – years, really – as I navigated what needed to be done for my mom, when, and by whom. Alzheimer’s is a tricky disease that plays out differently in every individual. No one could really tell us what to expect, except vaguely; there is no timeline or schedule; there are limited medicines and no cure.

Let me take a minute to tell you a bit about this woman, my mom, so you can fully understand what Alzheimer’s has stolen. There was nothing my mom could not do, from basic plumbing to planning large parties or family trips to hosting and cooking Thanksgiving dinner for 20 to 30 people. She was a fantastic gardener and cook and loved listening to music and singing. She loved to play tennis and to travel; she was very involved in our schools and community, especially with the Philadelphia Parks Alliance. She attained her Bachelor’s degree while raising 3 young children (cue major guilt feelings for the snarky, bored expression on my face in her graduation pictures). Our family hosted French and German exchange students during many summers, and most became part of the family and returned many times. She was a committed friend.

Above all else, she was the most devoted mother – as my brother once said, “Mom was my biggest fan”. Our birthday parties were simple but special – the birthday cake was always homemade, she planned treasure hunts in the woods near our home, or pin the tail on the donkey in the backyard. At Christmas she baked cookies of at least 6 varieties and then plated them up and gave them as gifts to all of our neighbors. She made us homemade Cabbage Patch Kids and Pound Puppies for Christmas when they were all the rage and couldn’t be found in stores. She made our Halloween costumes. As we got older, she was truly just a phone call away, so reliable, always available to listen. And she just couldn’t wait to be a grandmother.

It’s weird to write a eulogy for someone who is still alive, but that’s what Alzheimer’s does. The person stays but who they were goes.

I could write multiple articles, probably fill a whole website, about the nitty gritty details of what it takes to face one’s suspicions and have a conversation about the possibility of Alzheimer’s with your beloved parent. About reading the book When Things Fall Apart by Pema Chodron and wanting to hurl it against the wall after about page 13 – I wanted to fix it, not accept or sit with it. About wanting to preserve my mom’s pride and independence, but also being responsible for her safety. About delicately extracting personal information – Medicare number, financial information, etc. – from a private, independent woman where it had previously not been my place to interfere. About the painful reality that I would hire a babysitter not to go out with my husband or see friends but to take my mom to a doctor’s appointment or to attend an Alzheimer’s Association meeting or a support group. About the countless hours I spent trying to figure out what needed to be done – visiting assisted living facilities; making doctor’s appointments; calling care managers, banks, lawyers, the Alzheimer’s Association hotline, care agencies; worrying about my own memory and fate. About triaging surgery decisions with an orthopedic surgeon while standing in the middle of a grocery store aisle and later while watching my kids at the playground discussing with the neurologist the potential impact on my mom’s brain of her going under general anesthesia. About how I spent way more time on the logistics of my mom’s life than I could ever spend with her.

Oh, my goodness, the agonizing, sleepless nights, the constant dull ache in my stomach, the heaviness in my heart. The grief and responsibility weighed on me constantly; I had trouble eating; my RA kept flaring up, which meant I was in terrible physical pain; and I never laughed – life was overshadowed by such a dark and heavy cloud, how could I?

Do you see why I needed an oxygen mask?

It may be helpful for anyone who is dealing with Alzheimer’s in some capacity to hear our story in more detail and some day I will write more. But, for now, I want to simply share the message of hope I take from this painful journey: this disease, this diagnosis, tore at the bonds of my family to the point that I thought it would break us. The grief and responsibility ripped up my heart and broke me down until I was just a shell of my former self. Eventually I learned to face into the fire and to not shrink back. And from the ashes of my soul, rose a stronger, more connected, more grounded, happier and much healthier me.

I look at the Alzheimer’s diagnosis as a shot across the bow, a message from the universe to PAY ATTENTION. My mom was always going to predecease me if life played out in the regular order of things. So instead of taking her for granted, I really paid attention. I visited and called more often when she was still able to communicate, and now I visit her as often as I can just to be with her. My brothers and I talk more often. My mom’s friends/our hometown community, have stayed in touch all these years, with me and with her, supporting us both through the diagnosis and truly honoring the friend and the person she was by giving her the highest quality of life possible.

As for me, I have a deep and wonderful support system from my husband’s quiet, constant and loyal love to friends who I can feel almost literally propping me up at times. I try to live in the moment, to seize the day, to be present with my kids even when, admittedly, there are moments I’d rather check out!

I try not to dwell in the land of wishful thinking anymore and to play the cards I’ve been dealt. To be awoken to the fact that all of this messiness and pain and love and friendship IS life, is a gift. As John Kulish wrote in Bobcats Before Breakfast, “I grieve in the same measure I have loved”. And that’s all there is to say about that. My mom was my biggest fan, and I am also hers.

Please go ahead and share the good word!

Like this:

It would be disingenuous of me not to share how HARD it was for me to go to Guatemala. That may have been clear from my earlier post that mentions the soul-searching I went through to decide to go in the first place. I am nothing if not risk averse. Or from the tears I cried when it was actually time to go to the airport. It was really HARD to leave – there were so many unknowns and my old friend self-doubt had a lot to say about my decision.

Sure, I’ve been brave before – ostensibly. I’ve traveled all over the world, I’ve taken jobs in states and countries I had previously never even been to before arriving for work. But so much of that bravery was born of desperation or an “it can’t be worse than this” attitude, not actual courage. And so much of it was before having children. Going to Guatemala, on the other hand, was a choice to do something different when things were going perfectly fine. And that kind of rocked me.

One of my favorite all time quotes is: “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived”. That’s from Henry David Thoreau’s Walden. It’s a message I picked up decades ago, and it’s one I’ve carried with me since.

In my twenties, I would literally go to the woods, especially my sanctuary around Katahdin in Maine, where I found my people, my place, my footing in this world when I needed it most. I find life there to be a little less noisy, a little more simple, and the scenery so beautiful that it soothes my busy brain.

As I’ve gotten older and my responsibilities to and for others have expanded, I try to find ways to simplify my life, to front only the essential things, to bring the peace that I find when I am in the woods home with me. Despite all my family responsibilities, my anxiety, my self-doubt, I don’t want to forget to live. I want to live authentically and bravely and not, like Thoreau says, from the vantage point of looking back at the end of my days, discover that I had not lived.

And so I choose, daily, to face into the fear. I get on the plane (heck, I buy the plane tickets!) to Guatemala; I push the publish button on this blog while cowering behind the screen awash in vulnerability; I belay at the rock gym even though, fully trained to belay, my mind still tells me it’s awfully risky; I participate in a triathlon for the first time ever when my Rheumatoid Arthritis is finally in remission and I think “maybe I can still do something like this after all”; I drive my beautiful, vivacious, young and also scared mom to the doctor and hear the Alzheimer’s diagnosis we have suspected but been dreading; I go to the woods with my kids and share with them the joy I’ve found there, though it’s not nearly as simple or quiet with them in tow! I stretch the boundaries of my comfort zone. I breath through the self-doubt and the fear and I LIVE.

My life has been the very definition of bittersweet these last several years. And I am so incredibly grateful for all of it. Without the fear, how would I find my courage? Without the bitter, how would I taste the sweet?